Saturday, January 22, 2011

Thursday, January 13, 2011

No speech? No special education? No occupational therapy? Only physical therapy? I cannot get over the anxiety I am feeling over Mia's most recent news. It is wonderful news......amazing really.......yet it leaves me unsettled. How is it possible?

We know what the doctors have said. We have seen pictures of her brain compared to that of a "normal" brain. We have read the prognosis for severe congenital hydrocephalus and VATERSydrome. We have held her frail body and enormous head that prevented her from sitting up just one year ago. We have worked through countless therapy sessions and doctors visits. Nothing adds up, nothing makes sense! How can we be done with Early Intervention with the exception of physical therapy? Given her medical diagnosis, how is this possible?

Is she really ready to lose that support? You may be thinking that I should be happy for her and so proud of how far she has come. Of course I am. My joy and pride are immeasurable! I had those way before she began disqualifying herself from services. I look at her everyday and think what an absolute, beautiful miracle she is and I marvel at everything she accomplishes. She is my hero in every way. But I also worry! Worry that she still needs that constant support system that has been in place for her from the day we brought her home. Worry that the gap she is "supposed" to have is just around the corner or maybe even down the the street a little ways. Worry that she is going to fall between the cracks. You know, that kid that doesn't quite qualify for services and next thing you know is falling way behind.

As her mother, I watch her constantly. I see things that others don't or maybe I just worry about things that others don't. My evaluation is completely different! I know she can repeat anything I ask her to say. She tells me she is "high maintenance" because I asked her to say "high maintenance". She is a parrot with exceptional pronunciation. She can say Christmas tree but every tree and every plant is a Christmas tree! I have no concerns with her expressive language it is her receptive language that I question. Is she really understanding and making connections, using higher level thinking (for a 26 month old)? I don't see a lot of independent thinking. She memorizes and repeats. She mimics everything; her play, her speech, her socialization. Her fine motor skills have improved greatly. She can manipulate puzzle pieces and place pegs in a hole. However I worry about how her hands shake when she raises them to a certain level. I see how at lunch she cannot eat a bowl of soup without spilling most of it. Her sensory issues have improved but she continues to play with hair and is now pulling it out of her head whenever she loses the strand she had. She loves to collect things and will "collect" for hours. These are just some of things that worry me. They don't "qualify" her for services but they "qualify" as concerns I have.

We have Mia's IFSP meeting next Friday because, of course, we are now in the process of trying to make a decision for preschool. You may recall I had this all figured out (ha, ha!). Well, she may not even qualify for the programs we were considering. Yes, just when we thought we had our preschool ducks in a row, the Man upstairs, once again, is letting me know who is in charge!

I would like to end with a quote from a book, Blue Sky July, a wonderful friend is letting me borrow.

"I realize miracles are so commonplace we barely recognize them anymore, and near the circles of mothers anxiously comparing milestones at the school gates, I see how we live in time where normal is not enough, and we are never full.

Joe gives me insights I could never have understood without him, and he gives me heartbreak. To separate these two responses would be impossible. He is equally beautiful and terrifying" (p.42)

Mia's Marchers

Mia's birth

About Me

Mia is a twin and one of our four beautiful children. When my husband and I went in for our routine, 16 week ultrasound, the doctor noticed that one twin had fluid on the brain, hydrocephalus. We were told that "twin B" had a less than 50% chance to survive and that we may want to consider fetal reduction. This would give "twin A" a better chance to thrive. How could we terminate? God had blessed us with two beautiful children already and we just prayed He would bless us again. The hydrocephalus was more severe with every ultrasound. Thankfully, both babies made it to 36.5 weeks. On Novemver 25th, 2008 we met our two beautiful daughers, Mia and Gabriella. Mia was taken to surgery immediately for a colostomy and to have a drain placed to release some of the fluid from her brain. She was born with severe hydrocephalus, an imperforate anus (part of her VATER Syndrome), one kidney and abnormal vertebrae. She is our miracle and our angel!! Her smile just melts our hearts. She is so strong and she has changed our lives completely, for the better! We are blessed to have so many friends and family that support and pray for Mia on a daily basis.